Help! Advice needed.

[jude50]

Just joined this wonderful site today. I have been diagnosed with severe COPD. My fev1 was 82% this time last year and is now 39%. Last year I was going on 8 ml hikes over hill and dale, whereas today I can't walk from my lounge to my kitchen without my sats dropping to 88%. I have been off work for 4 wks now and am in danger of losing my job as I am a support worker in the NHS and spend 10hrs a day on my feet. I have been told that nurses are afraid for my well being and I'm not allowed back in till I've seen the occi health doc. I have had a couple of spirometry tests an echo and a ct scan. I'm not due to see consultant again till Sept, but cant keep on wondering whether I need any tests to ascertain whether I need ambulatory oxygen as I have read that sats under 90% aren't good for your heart. Any suggestions?

Thanks

[stone-UK]

Hi

Ambulatory oxygen is decided by a six minute walk test, they will check your sats every minute to determine whether you require oxygen, mine dropped to 83% when walking, started 2lpm recently increased to 4lpm.

Remember supplementary oxygen is only to maintain your sats at acceptable level, it will have little impact on your breathlessness

[jude50 in reply to stone-UK]

Thanks Stone. Is 88% acceptable level? Not too worried about the breathlessness just concerned I may be doing myself damage by functioning on low sats.

[stone-UK in reply to jude50]

Hi

88% is the cut of point they like you to be 92% plus.

When I start my six minute walk test I am at 96% this drops to 92% with oxygen, my recovery time is I minute thirty seconds. Which means when I stop to rest I have to stop for that length of time to get back to my 96.before I continue.

What is your normal and how long does in take to get from 88 to your normal level at rest.

[jude50 in reply to stone-UK]

At rest it's 94 - 96%. Takes about 1 min to get back to that level. How do I go about getting a walk test. Doing pulmunary rehab at the minute. Can the respiratory nurses there refer me, do you know?

[stone-UK in reply to jude50]

Hi

They will do it for you my initial test was done at pulmonary rehabilitation, they later referred me to the respitory team at the hospital for confirmation and continued assessment. It is the respitory team who order your oxygen and monitor your requirements, it is no longer done by your GP.

[knitter]

Hi and welcome, I was wondering if anything had happened during the last year for your FEV to have dropped and your ability to walk and work decline.

Have you had a chest infection or a change in medication.

The BLF have a helpline you can ring or email...they can advise you better then me

03000 030 555. Open during working hours.

Take care

[jude50 in reply to knitter]

Hi Knitter. Yes I had a bad infection over the christmas period and my gp but me on spiriva and symbicort, both of which I had been prescribed the year before but never taken as I had no real symptoms from the COPD when it was mild.

[knitter]

Hi again, you could discuss your medication with your health practioner

[Hidden]

Thats a big difference....do you smoke

[jude50 in reply to Hidden]

Hi Mandy. I was smoking for part of the last year, yes. Have given up for 6 months now though.

[Hidden in reply to jude50]

Oh that probably caused a lot of damage but its not easy to pack in so well dont for doing it

[casper99]

Hi Jude and welcome to the board. I can't help with oxy question but just wanted to say hi. xx

[jude50 in reply to casper99]

Thanks Casper.

[Puffthemagicdragon]

Hello Jude. I prefer a blood gas test to determine how much ambulatory oxygen I need. I find it more accurate. That's just my preference though.

[soulsaver]

I don't follow - you had no symptoms ...but had spirometry? And were prescribed Spiriva + symbicort?

Are you forgetting something? What made them do the tests prior to the infection last year?

[jude50 in reply to soulsaver]

Hi soulsaver. I was diagnosed with mild copd back in 2012 after being hospitalized with pneumonia for the second time. It was then that I was put on spiriva and symbicort. I took them for a while but then after about 6 months because I was symptom free (no breathlessness etc) and as I had also been diagnosed with mild bronchiectasis (wrongly apparently), and on talking with gp, we decided it was probably best not to take the symbicort anyway, so I stopped using them. Because I had been diagnosed with copd I went to gp's yearly for spirometry. 2013 and 2014 my copd remained at mild but in March 2015 had become severe. Hope this makes things a bit clearer.

[Cyberpunk]

Hi there I was like that for months gasping for breath then the lung specialist put me on a tablet called uniphyllin and this has done wonders for me couldn't walk ten yards and was knackered now I can walk at least two miles on the flat the tablet has saved my life cos I thought that's me house bound. Couldn't go anywere really has done wonders for me this drug wish I would have got it sooner I get get out the house now which I never thought I would be able to I wish you all the best and ask them for uniphyllin takes 3 to 4 weeks to kick in and then you'll feel the benefit of it changed my life for the better

[jude50 in reply to Cyberpunk]

hi cyberpunk. Thank you, that's something I have never heard of. Will definitely look into that

[soulsaver]

That is scary - and unheard of, in my experience, going from mild to severe in the blink of an eye. I hope it's an acute thing and you get back to good.

Best wishes.

[jude50 in reply to soulsaver]

Thank you soulsaver. Just come back from occi health and they have decided to redeploy me on medical grounds so feeling very down at the moment